'We knew it was a totally random thing': parents' experiences of being part of a trial

Harvey, M.E. and Nongena, Phumza and Edwards, D.J. and Redshaw, Maggie (2017) 'We knew it was a totally random thing': parents' experiences of being part of a trial. Trials, 18 (361). pp. 1-9. ISSN 1745-6215

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Background: Studies exploring parents’ trial experiences generally relate to their understanding of the consent
process and the development of researcher strategies to facilitate recruitment and retention. The aim was to better
understand parents’ experience of being part of a trial at the time and their perceptions of trial participation
in retrospect.
Methods: Data were collected in a number of ways: from recorded discussions between parents and clinicians about
the MRI or ultrasound, in open-text responses to questionnaires and in qualitative interviews at 1 and 2 years after
participation. Thematic analysis was undertaken using NVivo10.
Results: Key themes identified were ‘deciding to take part’, with subthemes associated with ‘benefitting self’,
‘benefitting others’ and ‘being prepared’; ‘the randomisation process’ with subthemes relating to ‘acceptance’
and ‘understanding’ and ‘actual engagement’ with subthemes of ‘practicalities’ and ‘care from responsive staff’.
Conclusion: Parents’ perspectives on the trial and the processes and information received reflect their
understanding and experience of the trial and the value of parent-friendly information-giving about participation,
randomisation and follow-up. The practical and logistical points raised confirm the key issues and parents’ need for
sensitive care and support in the course of a trial. Looking back, almost all parents were positive about their experience
and felt that the family had benefitted from participation in the trial and follow-up studies, even when the
developmental outcomes were poor.

Item Type: Article
Subjects: A900 Others in Medicine and Dentistry
B700 Nursing
Divisions: Faculty of Health, Education and Life Sciences > Centre for Social Care, Health and Related Research (C-SHARR) > Family Health
UoA Collections > REF2021 UoA 03: Allied Health Professions, Dentistry, Nursing & Pharmacy
Depositing User: Merryl Harvey
Date Deposited: 12 Oct 2017 21:39
Last Modified: 12 Apr 2018 11:14
URI: http://www.open-access.bcu.ac.uk/id/eprint/5214

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